Friday, November 25, 2011

Beautiful, Messy, Included

I was invited to share a little about my family and what inclusion has meant to us to some of the parents of Claire's classmates. I know, super exciting!! So here is what I have so far, what do you think?

First off, I thought I would tell you about
our family so you can get a better picture of who Claire is. My husband
and I received Claire into our home through the foster care system about five
years ago. She was our first foster child and we did not have any other
children. Claire has Down Syndrome, which means she has an extra pesky
chromosome tripping her up in every cell of her entire body. Down Syndrome has
a very large spectrum and we are frequently asked "is she high
functioning?" There are so many factors and no two children with Down
Syndrome are the same. Claire tries very hard and does well. We are so
proud of all that she has overcome. Just learning to eat and breathe,
things we take for granted, are milestones for Claire.

After two years of foster care we were able
to adopt Claire; shortly after, we had a baby girl, Makenna, who is now almost
three and Claire's closest companion. We also have another bio child,
Alice, who is nearly one.

Second, what is inclusion? Well, simply put,
it's students with special needs spending most or all of their time with non-disabled
students. Maybe a story is the best way to explain.

Claire jumps off the bus and tells me she ate
play dough today. Sounds funny, but I am overjoyed that 1.she said
"ate play dough today" and 2. She was at school today, sitting at a
table with other students playing. My heart for her is just that, messy,
imperfect, included.

Truth, inclusion probably won't bring her up
to grade level but being included makes her a part of so much more; a class, a
community, friendship, a positive self esteem. She feels valued, that is
what we strive for. More then that, Clarie affects others in a very important
way.

One of the things we considered while
adopting a child with special needs was how this would affect our other
children. Makenna (Claire's little sister) is an example of so many
positive benefits; reduced fear of people who are different, increased
patience, improved social emotional growth, improved personal conduct and self
esteem. Makenna could tell you how she loves her sister. Down Syndrome
means nothing to her. She has learned how to interact
with Claire in a way that works for them. Really, isn't that what we all
have to do when we grow up. We are constantly trying to figure out how to
be in relationships with people who are different than us. Makenna gets to
learn how at two years old. Adopting a child with special needs is
intimidating but it was the right choice for us. Claire, Makenna and
Alice are all growing to be amazing people because of their shared experiences.

There is nothing to fear. I think some
of us don't reason it out and live under the incorrect conclusion that if our
children are exposed to people who are different it will be
contagious. I want to say thank you to every parent who has simply
allowed their child to play with mine. Really, your child is my child's
greatest teacher. I know it is not always easy. My heart breaks
every time I hear that a child doesn't want to play with Claire because of her
sometimes inappropriate social skills but when a parent or teacher steps in and
teaches our children how to be friends I am truly touched.

We were at a store the other day when Claire
walked up to another child; arms outstretched in the universal sign for
"hug me." The little girl just stared back at her.
"Hug?" Claire said. With no reply from the little girl
Claire walked away to play with her sister. Wow, pinch me, I
thought. She learned! Claire is a hugger through and through and
she struggles with giving people their space. But there, that time she
did it and I know it's because of all the wonderful practice she gets at
school.

Being able to attend this ECAP was a huge
accomplishment for Claire. We are grateful to God for providing Claire
the opportunity to learn with her typically developing peers for the second
year now. She has such an amazing team here. It seems obvious but
being with peers is actually a pretty big deal. Navigating education for
a child with special needs is tough. It's a mix of too much and not
enough at once; always riding the line between more therapies and just being a
kid. There is always something to accomplish (OT, PT, and speech goals,
books to read, specialists advice to impalement...). This is such a
wonderful balance for her right now.

There are always so many questions when we
look forward. Will children accept her enough for integration to continue
to be a positive experience? Will the curriculum be so far over her head
that she losses her academic education in a classroom? If she does go to
Special Ed, will the children there have extreme behaviors that will rub off so
much that she isn't appropriate in other settings? I do not know the
answers. Each child is so different. We will take it one year at a
time. We are constantly redefining education for Claire and at some point
she will probably have an opinion too. I can't wait to see who she is
growing up to be.

We are raising her to be a part of
society. We want her to be able to interact in the world. To have
meaningful relationships and a positive affect on her community. Like any
parent, we want her to graduate with people she knows, go to football games,
spirit week... With that in mind it seems imperative that she does stay
in relationship with her peers. Inclusion isn't an amount of hours
in a class room. Being included means being a part of a community,
accepted for who you are. It is knowing your best friends favorite color,
going to birthday parties, and hopscotch on the play ground. Yes, Claire is learning how to interact
appropriately when she plays with a friend and that is amazing but other
children are learning an equally valuable lesson along the way,
compassion. Inclusion
benefits everyone because everyone plays an important role.